Neglected tropical disease as a 'biographical disruption': Listening to the narratives of affected persons to develop integrated people centred care in Liberia.

Laura Dean,Gartee Nallo,Karsor Kollie,Rachel Tolhurst,Sally Theobald,Anthony Bettee,Arianna R Means

doi:10.1371/journal.pntd.0007710

Laura Dean, Gartee Nallo + Show 5 more

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https://doi.org/10.1371/journal.pntd.0007710

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Abstract

BackgroundIntegrated disease management, disability and inclusion (DMDI) for NTDs is increasingly prioritised. There is limited evidence on the effectiveness of integrated DMDI from the perspective of affected individuals and how this varies by differing axes of inequality such as age, gender, and disability. We used narrative methods to consider how individuals’ unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond.MethodsWe purposively selected 27 participants affected by the clinical manifestations of lymphatic filariasis, leprosy, Buruli Ulcer, and onchocerciasis from three counties in Liberia to take part in illness narrative interviews. Participants were selected to ensure maximum variation in age, gender and clinical manifestation. Narrative analysis was grounded within feminist intersectional theory.FindingsFor all participants, chronic illness, morbidity and disability associated with NTDs represented a key moment of ‘biographical disruption’ triggering the commencement of a restitution narrative. Complex health seeking pathways, aetiologies and medical syncretism meant that adoption of the ‘sick role’ was initially acceptable, but when the reality of permanency of condition was identified, a transition to periods of chaos and significant psycho-social difficulty occurred. An intersectional lens emphasises how biographical disruption is mediated by intersecting social processes. Gender, generation, and disability were all dominant axes of social inequity shaping experience.SignificanceThis is one of the first studies to use narrative approaches to interrogate experience of chronic disabling conditions within LMICs and is the only study to apply such an analysis to NTDs. The emotive power of narrative should be utilised to influence the value base of policy makers to ensure that DMDI strategies respond holistically to the needs of the most marginalised, thus contributing to more equitable people-centred care.

Highlights

For many people with Neglected Tropical Diseases (NTDs), those requiring case management, their condition is highly visible and significantly contributes to morbidity and disability because of the range of physical impairments, associated stigma and social exclusion [1, 2]
We find the consideration of disease experience in relation to these narrative types important when considering how to support people affected by NTDs throughout all ‘phases or periods’ of illness experience which is further explored in the discussion
The Liberian health system and broader NTD community has an opportunity to respond to the needs and priorities of affected persons as they are presented here

Summary

Introduction

For many people with Neglected Tropical Diseases (NTDs), those requiring case management, their condition is highly visible and significantly contributes to morbidity and disability because of the range of physical impairments, associated stigma and social exclusion [1, 2]. When offered, management of NTD associated morbidity has been highly medicalised with a focus on restoring sight or reducing physical impairment with less consideration of the social and mental impact of these diseases and how this is influenced by inequities such as gender, age, geography and poverty[2, 9]. Integrated management of NTDs, defined as the implementation of activities targeting two or more diseases at the same time and in the same communities, has recently been proposed as a key solution to these challenges, there is limited evidence on the effectiveness of these approaches from the perspective of affected individuals[1, 10, 11]. We used narrative methods to consider how individuals’ unique positions of power and privilege shaped their illness experience, to elucidate what practical and feasible steps could support integrated DMDI in Liberia and beyond.

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Discussion

Conclusion